Husband w/Oligo

Mama 2 2 · Posted: Tue Mar 25, 2008 5:50 pm Post subject: Re: Husband w/Oligo

Greetings everyone,

It's been a short while since posting, but I thought I'd drop a note hoping for some happy thoughts as we are on our way into town tomorrow for another MRI. These days always stress me out, and I've had a wicked stomach flu to add to the fun the past couple of days - can't keep much of anything down Mr. Green

. At least my hubby has had the past 10 days off work for spring break and has had some time to relax and catch up on rest - though he spent half of it painting our house, his parents paid for us to join them for a few days at Harrison Hot Springs to take it easy. It's been nice to see him not so exhausted for a while, but he's back on the chemo (5 days) and back to work thurs.

I'll update after the MRI - and hope everyone else is well. I've seen some sad postings in the past few days of people's loved ones passing, or close to that point, and my heart goes out to you all.

You are all in my thoughts,

Cheers!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

brainman · Posted: Tue Mar 25, 2008 6:07 pm Post subject: Re: Husband w/Oligo

Mama 2 2, you and your husband will definitely be in my thoughts and prayers. Hope the MRI turns out good. I also hope you get to feeling better. I always get very nervous the day before an MRI and I have had so many since 1992 that I cannot count them all. The thought that goes through my mind is, of course, "What if?" Confused

.

Let us know the results as soon as you can.

Glad to hear that your husband got a chance to rest Smile

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Wed Mar 26, 2008 5:28 pm Post subject: Re: Husband w/Oligo

Hello Chelsea
I wanted to let you know I am thinking of you whilst you wait on yr Husband's next MRI. This is certainly a nervous time full of uncertainty & confusion.
I await yr positive reply.
Prayers for you all.
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Aimster · Regular Joined: 03 Jan 2008 Posts: 38 Location: Nebraska

I will be thinking of you, and hoping to hear great news from you soon!
_________________
Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

Mama 2 2 · Posted: Fri Mar 28, 2008 12:14 pm Post subject: Re: Husband w/Oligo

Greetings everyone,

Sorry for the delay in update, I wanted to just spend a nice day relaxing with my girls yesterday as we had hardly been home in the past week and when we were home I was throwing up. . . . Mr. Green

We had some good news on the MRI front though - his scan was clear enough that they decided to give him a 'break' from chemo for a while and just scan again in three months! I think they were surprised that we didn't jump for joy at the news initally, because my husband said if it's better for him to stay on it he would as the side effects aren't bothering him too much, but they said there aren't enough of the 'bad' cells left to worry about it at this point so no need to keep poisoning his body and run the risk of the cells becoming resistant to the chemo.

He still has to stay on the dilantin, but at least they said he can drive again - though they looked in my direction when they added that if someone else is available to drive he should let that person drive, so I'm not off the hook yet Rolling Eyes

. Don't get me wrong, I like driving, and we just got a new vehicle so that's nice - it's just not convenient to have to haul two babes around town when he just needs to pick up some bread or do the recycling (yes, I'm one of 'those' mom's who doesn't leave their newborn for more than 10 minutes until they're really old. . . . the few times I have left her for a few minutes I come back and she's screaming!).

I was a little concerned that the doc had told us last time that he doesn't like to see tumours respond 'too quickly' to the chemo as that means it's a more aggressive tumour (and the nurse had previously told us she "couldn't believe how fast his tumour responded to the chemo"), but he said that given the fact that this was a smaller tumour to begin with it shouldn't be much of a concern. Does anyone else have any experience with this? Our doc is always so vague and never seems like he wants to share too much info. . . .

Anywhoo, we are going to be cautiously optimistic for now and take it as a good thing. I wish you all well - I should run for now, I have a poopy diaper to change and a three yr old getting bored . . . . Laughing

. I wouldn't give up this mommy gig for the world though!

Much love to you all!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

brainman · Posted: Fri Mar 28, 2008 12:44 pm Post subject: Re: Husband w/Oligo

Chelsea, glad to hear the great news! My situation was about the same. After two cycles of chemo, my MRI showed only necrotic cancer cells. However, my doctor were of a different opinion than your husband's doctor. My oncologist wanted to keep me own chemo for at least 18 months Shocked

. I made it through 13 months. After being hospitalized twice for pneumonia, my oncologist finally said that it was time for a break.

But that was 15 years ago. So much has changed since then. The prognosis for a mid-grade glioma (II-III) is so much better now. I would be comfortable following your husband's medical team's advice to take a break now and have an MRI again in 3 months.

As for the Dilantin... I hate to say this but I expect that he might need to be on it or some other type of anti-seizure medication for the rest of his life Sad

. Fortunately, that is not that bad and he will be glad that he takes medication rather than risk a seizure and not be able to drive again Razz

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Aimster · Regular Joined: 03 Jan 2008 Posts: 38 Location: Nebraska

Chelsea,
Congratulations to your family on the great news! I'd been thinking about you Very Happy

It must feel great to your husband to have permission to drive again. Sweet freedom! I hear you about the child thing - seems like as soon as you step out the door, all they want is mom Rolling Eyes

These days my two-year-old is permanently attached to my hip and screams bloody murder every time I set him down! And of course the four-year-old isn't pleased about my being monopolized by her brother. We are definitely the center of their universes Very Happy

_________________
Amy (39)
*low-grade oligoastrocytoma in right frontal lobe, with 1p/19q codeletion and early anaplastic features (first observed Aug. 2007; diagnosed Jan. 2008)
*gross total resection July 2008 at Mayo Clinic
http://cancerforums.net/viewtopic.php?p=28526

Mama 2 2 · Posted: Sat May 10, 2008 2:59 am Post subject: Re: Husband w/Oligo

Hello all! I hope everyone is well . . .

I just had a quick question - my hubby has been having numbness in his fingers for the past few nights. He feels it's from carpal tunnel syndrome (CTS) - which he thinks he has suffered from in the past, but has never been diagnosed (has never bothered to see anyone about it). I figure he's probably right and since it's in both hands, and the tumour is on his right side, it's probably not tumour related, but I thought I'd ask around here and see if anyone thinks it may be of concern.

He used to get problems with numbness in his lower arm, wrist and hand(can't remember which one now), years ago before his tumour was diagnosed, but we did just assume CTS because other's in his family have it and because he was working in a bakery repetitively rolling dough every day. He thinks it's happening now because he has spent countless hours in the past few weekends chopping out a couple of stumps in our backyard with an axe. I dont' want to sound paranoid, but I know Jim posted on another thread that even a cell or two of growth can affect change . . . .

I'm pretty confident it's not tumour related because of the timing of his symptoms and genetic predisposition to CTS, but I thought it wouldn't hurt to ask.

Cheers! And I wish all the mom's out there a happy mother's day!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

brainman · Posted: Sun May 11, 2008 7:42 am Post subject: Re: Husband w/Oligo

Hi Chelsea. I too have CTS (diagnosed not just assumed Wink

) on top of right sided weakness due to the damage caused by the cancer and surgery. My CTS does not cause numbness; it causes spasms that are hard to describe. The closes analogy I have is to a "charley horse"... very painful muscle contraction. I do not have CTS symptoms very often... only when I work with my hands trying to do little things like thread a needle.

I am not sure if this information is helpful or not. My best advice, as always, it to talk with your husband's own medical team.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Mama 2 2 · Posted: Fri Jun 13, 2008 8:16 pm Post subject: Re: Husband w/Oligo

Hello everyone,

I hope all are well . . . . I've been a little 'radio silent' these days (not much time to type when your hands are full with a 3yr old and a 8 month old trying to walk already!), but I do check the site almost daily to see how everyone else is doing and my heart is will you each always.

I need to ask for some 'happy thoughts' as our next MRI is approaching . . . coming up on the 18th. I always get incredibly anxious for the two weeks or so leading up to the scan. We are also planning a big trip to Europe for my brother in law's wedding this summer, so I'm REALLY hoping his scan will be clear and he can stay off the chemo for a little longer.

Does anyone out there have experience with going on Temozolomide (Temodar), having a quick response so they take you off (after six months) only to have to go back on it shortly after? Or has anyone found that they were able to stay off it for a while? They took my husband off after 6 months, and it's now been three months since he's been off. It was just over a year from when he completed radiation to when the tumour returned last time, but they also thought that the radiation would be more effective on his tumour because he doesn't have the p/19q - they also told us the radiation should slow the regrowth to 10 yrs!

Also, does anyone know of statistics with LONG term survival with grade 2 gliomas? I know Jim, you've been around a long time! 15yrs - gives us hope! But the stats you find online are grim - a friend of mine in med school tried to ease my mind by telling me that's because there aren't enough studies done and data to give a clear picture - but I've found only a few people who have made it past the 10 yr mark. I just don't know if we should let his family in on the fact that it's entirely possible (likely?) he may only have 5+yrs. His brothers get pretty upset when it comes up so we don't really give them the 'dirty' details. We also try to stay really positive and hopeful for better, but at the same time we need to be realistic about his prognosis, and when we go to Europe in the summer, it will mark the first time his family (brothers and parents) will have all been together in 3yrs (just before the tumour came back the first time) and I'm wondering if we should let them know. They know it's serious, but I don't think they know the expectancy stats.

Well, one of my girls is up from her nap so I have to run! As always, my heart and thoughts are with you all.

Cheers!
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

brainman · Posted: Sat Jun 14, 2008 1:18 pm Post subject: Re: Husband w/Oligo

C, I have never taken Temador so I cannot help there. However, I can help with the long term survivor rate question. Current statistics put the survivor rate for all forms of state II gliomas are over 10 years. And even after then, if the glioma recurs, there are newer and better options in the research pipeline all the time. My glioma stage II did recur after 13+ years (summer of 2005) but as a grade III. It was removed surgically and with radiation at the end of 2005 - beginning 2006. At that time, I was told that I had an exellent chance of going 7 more years before it recurs again. So, by no means is a glioma II fatal. I guess the odds of being in a fatal car wreck are higher.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat · Posted: Sat Jun 14, 2008 4:49 pm Post subject: Re: Husband w/Oligo

Dear Chelsea

I can fully understand & relate to your feeling of anxiety with yr Husband facing another MRI. I am sending a mammoth amount of "happy & positive" thoughts to you from Aust to Canada. I will continue to keep you in my prayers & thoughts at this time & look forward to doing a "happy" dance after receiving yr update.

My Bro takes Temodal & has only had a brief period without it. After May 07 surgery & an MRI showing no visible signs of tumour he was taken off Temodal for about 6wks. Next MRI in Sep 07 showed regrowth & he was then put on 5/23 regime of Temodal. This year in Feb he had max amount of Gliadel (chemo) wafers placed in tumour bed & no other chemo treatment for 2 mths. End of May next MRI showed regrowth so he is back on 5/23 regime of Temodal for 2 mths until follow up MRI beginning of Jul 08. Mark has always coped fairly well with chemo (no real side effects), although now he suffers terribly from fatigue & I have read elsewhere that this can be attributed to chemo. I guess it's got to take it's toll somewhere!

You have so much to look forward to with your trip to Europe & catching up with the in-laws, this will be a milestone for your family to achieve after all you've been through with yr Husband's illnessl! As to sharing all the details with his family about prognosis & statistical outcomes, be honest & upfront with them if they ask, that's all you can do. I feel they probably know more than you think as you know there is so much information available to us now with the WWW! I'm sure survival rates are different in every case & you don't have to look any further than our Jim for inspiration!

God bless,
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Mama 2 2 · Posted: Tue Jun 17, 2008 10:57 am Post subject: Re: Husband w/Oligo

Hi Jim and Angie!

Thank you both for your feedback and happy thoughts Very Happy

. You each do so much to help, inform, and encourage others, all the while dealing with your own situation - it's truly admirable.

Jim, I was glad to hear that you know of stats that are for survival over 10yrs . . . the best I had read was 5-10yrs, and 10yrs survival only for about 50%. Since we are 6yrs into this journey, it's easy to get anxious about time - it's not something that I think about daily (I'd go crazy), it's just with the MRI tomorrow . . . .

Every case so different, so we'll just hope that his is one of the better ones!

~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

brainman · Posted: Tue Jun 17, 2008 8:17 pm Post subject: Re: Husband w/Oligo

C, yes, we have come a long way since 1992 when I was told I only had a 10% chance of surviving 10 years. I am not sure why this change. Certainly, we have new and better therapies now. But I also thing more long term survivor rate studies have conceded that the limited data was not giving the correct picture. I also think that back then they were talking about all gliomas and all grades and not just grade II.

I am not sure if your husband's medical team will want to stop the chemo so soon. They might be open to a short break of a few weeks. Especially since he does not have the 1p/19q gene deletions he will what all the chemo he can stand.

BTW, my son was 3 when I was hospitalized. I have a picture of him sitting on me in my hospital bed Very Happy

.

As always, you and your husband are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Mama 2 2 · Posted: Thu Jun 19, 2008 4:55 pm Post subject: Re: Husband w/Oligo

Well . . . the MRI showed that there was some new growth of my hubby's tumour. How much is in question at this point, because our n-onc didn't bother to go 'all the way back' to his scan in Oct to compare to the amount that was there before, he only compared it to the last scan which was 'clear' and told us that now there is 'a reasonable amount of junk' there - to use the clinical term.

We were his last appointment of the day and so he didn't want to take too much time - also we needed to get the blood work done and the chemo picked up so there isn't much time to talk at that point because they all close at 5pm. Because of all this we also missed the ferry we wanted to take home and the ferry we did have to take was running late so all in all a pretty lousy day.

So - he's back on temodal 5/23 and this time they said they would keep him on it for longer, even if it does work quickly again. At our last visit when they took him off of it, we thought that 6mos was a pretty short period to be on it and Elias even offered to stay on it if that would be better, but they said no - but the bugger came back with only three months off. I think they did that because they didn't want to run the risk of the cells becoming immune to the temodal, especially since it had shown to be effective. He'll also be on chemo for our trip now, which sucks - and makes it really hard to get travel insurance for him.

After the first surgery it was 3 1/2yrs before it was back, then after the second surgery and radiation it was 1 1/2yrs or so, now only three months since stopping chemo it's back again - but our n-onc still says it's not aggressive. Well, who knows what he considers to be a 'reasonable amount of junk' - maybe it's not too big, but still . . . . .

I've contacted our nurse and asked her to get me the details on the size and hopefully we'll get a better picture at least on how big it is and how it compares to previous scans. Hopefully she'll come through for us. I'm feeling pretty down about the whole thing and not functioning well today. I almost burned the house down trying to make lunch for the girls and I (I put a pan on the stove with oil in it, turned it on high and walked away?), and I could barely make oatmeal for breakfast. I know I'll be feeling better about it soon, I need to try to sleep more as that would help. Elias is taking it very well - he said he expected it. We both understood it would come back, I guess I just didn't think it would only be three months!

Well Jim, I certainly hope that my little girls will get to spend at least as much time with my hubby as your son has been able to spend with you. Both my girls were born after this started - though our oldest was 9mos old at the time of his second surgery - they certainly help keep us positive and make living through it all worth while!

Argh. Well, I could go on but I've vented enough for now I think. Thank you all for listening and for your warm thoughts and prayers. Mine go out to you in return.

~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

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